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Topic: Hi there (Read 390 times) |
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Mrs. Glenn
New Board Newbie
Cluster Widow
Posts: 5
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*waves* Hi, Im the new girl. Im not a sufferer (THANK GOD!), but my poor husband is beyond chronic. Hes had clusters just about daily for several years now, normally multiple attacks in a day. We havent been able to figure out a pattern of remission because they are so few and far between. If he has a good day its something to celebrate but even then hes afraid of jinxing it so we pretend not to notice. Its sad for me and our daughter because we get so little of him - always in that shower, but that pales in comparison to what hes going through. I know youve all heard or lived the story so Ill spare you all the details. Im so relieved to find others so familiar with the clusters and Im really looking forward to poring through all of your wisdom and advice. Ive done a brief sweep through the message board but I was wondering if someone could please direct me to a thread on Prednisone. And Im off to search some more ...
Thanks!
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Bob_Johnson
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Re: Hi there
« Reply #1 on: Feb 14th, 2008, 3:28pm » |
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Given his history, I do hope you have found a good headache specialist. If not:
1. Search the OUCH site (button on left) for a list of recommended M.D.s.
2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.
3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.
4. http://www.achenet.org On-line screen to find a physician.
5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder" which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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Either book would be of real benefit and will cover Pred:
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
This will cover Pred also.
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Bob Johnson
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Guiseppi
CH.com Alumnus
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Posts: 2703
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Re: Hi there
« Reply #2 on: Feb 14th, 2008, 5:16pm » |
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By all means tell us his whole story. What meds he is using, what has and hasn't worked in the past. First off you are a saint for being a supporter. My wife has stuck with me thru 28 years of these damned things, her and my girls have been awesome supporters, we couldn't do it without you guys.
Has he ever tried breathing pure oxygen for an attack? Almost 30 years of battling these demons and it's still my first line of attack. I can stop an attack flat in as little as 10 minutes on the oxygen. If he hasn't tried it yet demand it from his doctor. A great link on the left to print out and take to the doctor with you.
Thanks again for being a supporter, you guys rock!
Guiseppi
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caoimhin
New Board Newbie
The dude abides
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Posts: 10
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Re: Hi there
« Reply #3 on: Feb 15th, 2008, 6:47pm » |
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Hi Mrs G
I cant even begin to imagine the suffering chronics have to go through so my heart goes out to you and your husband. but youve came to the right place. I knew nothing about CH until I found this site and after a few days of researching this site and its links I feel like Im an expert now. You should definitely look into O2 therapy its a must have especially for the chronics. Personally I can usually stop an attack if I get a cuple of cans of red bull down my neck or if thats not about a super strong cup of coffee. Dosnt always work but its worth a try, if he hasnt treid it already that is.
Keep posting coz these guys really know what there talking about and the support they giv is second to none.
Sendin some pain free thoughts your way.
Caoimhín
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kcopelin
CH.com Alumnus
New Board Hall of Famer
good grief
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Re: Hi there
« Reply #4 on: Feb 15th, 2008, 10:07pm » |
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Here's prayers for you and your husband, thankful that he has a supporter like you and praying that he gets some pain free time.
I'm chronic as well, has been 3 years now of daily hits. It is what it is, and I live between the hits, though I get very tired and feel hopeless sometimes (usually when I forget to reach out to my cluster buddies).
Welcome home!
kathy
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Mrs. Glenn
New Board Newbie
Cluster Widow
Posts: 5
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Re: Hi there
« Reply #5 on: Feb 16th, 2008, 3:10pm » |
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Wow! What an awesome group you are!! I actually teared up reading Bobs response - thank you so much!!
What we're dealing with here are three components of my husbands health, high blood pressure, cluster migraines, and an intense anxiety disorder. The problem is in finding solutions that are in harmony with all three health issues. Let me break it down.
He started getting the headaches about seven or eight years back. At first it was only when he drank alcohol, then it was without cause. He was popping so much Excedrin (about 8 a day) that he started getting these nosebleeds several times a day. He ended up diagnosed by a GP with migraines, quit taking Excedrin and started taking Inderal for blood pressure and a preventative, and of course Imitrex. During this time there wasnt much change in the headaches. A pattern emerged where he was getting them at the same times every day but the longest he ever went without one was three days. And that was only once. My poor husband gets 2-3 clusters a day and rarely has a day of relief. When Ive talked to him about recession he's actually broke down in tears because he doesnt believe that he will ever have one. The patterns may change but they never go away or even let up.
This is when he developed the anxiety disorder and the medical field had a hayday with him. They put him on Zoloft, Prozac, Buspar, Fluoxetine, and Zyprexa, each in rapid sucession and in case you cant tell Im just a little bitter over that period. This was when I developed my own anxieties over crappy doctors and their complete inability to actually care for their patients. If I know better than to switch up a persons psych meds that quickly, then why dont they??? Oh yea, because it makes them RICH! But enough about me. He began to see a psychiatrist who told him that Inderal could be a cause of anxiety. He took him off and put him on Seroquel and Lysinopril .. no preventative, just good ole Imitrex at 9 pills a month. He needs more like 36-40. This went on for a couple years, taking steam showers several hours a day, waking up to shower every couple hours. I sincerely dont believe my husband has slept a full night in years.
Last year I had had enough waiting for our docs to do the right thing and I pushed him to see a Neurologist. She diagnosed him with clusters and put him on Verapomil. Once he was at the full dosage he did notice a slight drop in the number of headaches but then his anxiety came back full force. He quit and was put back on Lysinopril for his blood pressure, and is once again left without a preventative. Its like he has to choose between this crippling anxiety or the crippling heachaches. What kind of quality of life is that?
So here we are, once again searching for answers. He popping Imitrex whenever he can but our insurance doesnt allow him even a portion of the amount he really needs. Thanks to you guys hes discovered the but with his blood pressure Im not very happy with that. He says that he doesnt care about the few bad years at the end, just as long as he gets some relief now. I say thats no way to look at life. I am unhappy with the way his Neuro has handled this. Sure, she diagnosed him and tried a medication, but I dont feel that she cares or has any real solutions. Plus her ofice is really disorganized and all the running around and confusion theyre causing is giving us headaches  I have decided to do another active search for a headache specialist. I dont care if we need to drive halfway across the state once a week, thats what we'll do. But until then we're on the Imitrex, Aleve, Redbull, shower kick. Monday we will go and get him some oxygen. Thank you for that little bit of knowledge! You guys do indeed rock!
Thanks for reading.
Carrie
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MJ
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Re: Hi there
« Reply #6 on: Feb 16th, 2008, 8:25pm » |
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Welcome home Carrie and to your spouse as well. Have him join in if he will.
You are not alone. Many of us have suffered in similar ways.
The folks here can and will help do not hesitate on any question at all and you will get answers.
Sorry about the multi meds he has gone through. Your right on the changing meds they can seriously alter the path of CH. Docs for the most part are seriously lacking knowledge on our affliction and you must arm yourself with as much info as possible. Much of that knowledge resides here on these pages.
The trex tabs can be allmost useless for those hit hard and often. Tabs and injects can also cause the headaches to rebound for some increasing the frequency of hits..
The Aleve, though beneficial on occasion, has a tendency to aggravate CH over time.
Ask doc about verapamil since he has high BP anyway many have good success with it.
A pred taper should be taken while the verap kicks in.
Oxygen helps for some 70% of clusterheads and should be given a serious try.
Anxiety can be a part of CH as well.
In 30some years of extreme suffereing like others I have found quality of life and attitude to be the most important tool any clusterhead could ever have. Live in the moments between the pain.
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MJ
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Bob_Johnson
New Board Hall of Famer
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Posts: 1796
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Re: Hi there
« Reply #7 on: Feb 17th, 2008, 10:10am » |
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Mrs. G: Going to put on my old counselor's hat now!
Treating the anxiety with meds ONLY is a failure routine. Meds will suppress anxiety quickly but it will come back as fast when he stops the meds. Strongly recommend finding a therapist/counselor who will combine some form of cognitive therapy (continuing the meds in the interval) so that he gains control over the anxiety.
Broadly speaking, the meds for good cluster management are not in conflict with those to treat the anxiety--but the two docs need to be in communication--one treatment cluster the one for anxiety. But the demands of living with cluster, as you now know, require that both problems be addressed at the same time.
That your husband is in despair is understandable but we bear witness to the reality that much can be done to relief the clusters. But he must learn how not to abuse any meds in an effort to control the clusters--this can lead to an increase in the attacks.
Stay in touch!!
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Bob Johnson
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